I mean, I guess. Everything has a month now, and seeing as there are only 12 of them, we will have to be content to share November with Alzheimer's, Crohn’s, Huntington's, lung cancer, and epilepsy (among others). Normally, I let it pass without comment--plenty aware of the sugar babies, thank you very much. Plenty aware, indeed.
So, why talk about it now?
Most days, I actually feel...lucky. I mean, it could always be worse, right? It’s “just” diabetes. Something like 371 million people live with it every day. Big whoop. Our family has to understand, but why does anyone else? It honestly will not affect their lives--the disease is not communicable, they don’t have to guard themselves against it. It does not prevent the girls from going to school or participating in activities. According to social security guidelines, it only constitutes a disability until the age of six, a bafflingly arbitrary cutoff they cannot justify when confronted.
Often, I feel like a whiner. Like I go on too much about it. Maybe it isn’t so bad? They don’t have to have surgery, it isn’t cancer. There is always something worse out there. This is a condition they can live with.
Well, yes. I can be thankful for that.
It will always be there, though. There is no cure. The cynic in me asks: where would the motivation for finding a cure be, when companies could milk this cash-cow condition for decades? Surely no one is that wicked though.
I do not have diabetes. Ran a stint with it, back during pregnancy. Didn’t really feel like it was my jam. I cannot speak to the disease itself, as I am not the one suffering from it. So I speak only as entrusted courier, tasked with shouldering this burden until the owners are able to take over it for themselves.
The damage dealt has two particular flavors: the initial impact, and the residual trauma.
When Emerald first went into the hospital in DKA, I was unable emotionally to fully process it. Michael and I were at war with life, and life was effortlessly winning at every juncture--every move, we were outplayed, every day felt like an ongoing calamity. Between struggling with Gabriel’s diagnosis of autism and his issues related to it, to to my own tumultuous health issues at the time, Michael working long hours six days a week to provide for us, we were doing the best we could to batten down the hatches and hold on until...until when? We didn’t know what lay ahead or when we would get relief.
That’s how I explain how we missed it. In truth, we had no reason to be looking for it in the first place. There was no indication that she was going to develop this disease, and the onset is so, so sneaky.
Emerald would get up in the middle of the night, asking for glasses of water. As kids do. We started letting her keep a bottle of water by her bed, and that seemed to solve that problem.
Then she was getting up several times a night to go potty. With all that extra water she was drinking, it made sense she was peeing more. Go back to bed, honey.
She had always been a little on the chunkier side--my first three were 99th percentile across the board in height and weight. Her sweet baby fat started melting off, coinciding with Gabriel thinning out as well. Neither were good eaters, so nothing was setting off alarm bells yet.
I suppose the most telling thing was her sudden dislike of going outside. She would complain, nonstop that she was hot, thirsty, tired. I would tell her how good fresh air and exercise were for her, and that we would go back in a bit. Off she would slink to lay down in the shade and do nothing. What a dramatic little person, I thought, as I pushed Gabriel on the swing.
All of these disparate pieces, managed from moment to moment, were not coming together to form the bigger picture. So we carried on as we always did.
Emerald was five years old. The doctor at the hospital told us she likely had the condition for three months before she went into diabetic ketoacidosis (DKA), which is what had brought us to the emergency room that day. It had caused her weight loss (about 20% of her total weight), thirst, lethargy, and frequent urination.
She wore her favorite dress--a dark green one with Winnie the Pooh on it that got torn while the hospital staff worked on her. It was probably mendable, but I threw it away because I couldn’t bear looking at it any more. Her hair was still long, wispy little mermaid curls at the end, which she hated because her head was too sensitive for me to brush. Already so fair, her pale skin was mottled with red.
My little strawberry girl.
The first night was rough, but we made it through. After four days in the hospital, they came to tell us she could go home.
The news of which caused me to experience my very first panic attack.
Michael and I had met with diabetes educators, the endocrinologist, dietitians. They want to make sure you feel competent and confident in handling this condition. I didn’t feel confident and competent; I felt overwhelmed and inadequate and doomed to fail.
Emerald sobbed and begged not to be poked any more. It was heart-wrenching. It wasn’t something you could explain to a five year old, except to say “Mommy’s sorry, I’m so sorry.”
I went for a drive to the pharmacy to pick up her insulin for the first time. Insurance had not kicked in yet; the hospital had helped us submit paperwork so she would be covered, but it would take awhile to process and we had to pay out of pocket to get the medicine tonight. My grandparents had sent us money when they heard, so we were able to afford the $600 for two tiny vials.
The song “Stubborn Love” by the Lumineers is what brought me down. It was playing as I was driving away, the line “so keep your head up, my love”. I sat in the parking lot and cried until I was sick.
I was barely holding on as it was. Gabriel was aggressive, destructive, and wild. Most nights we were managing a loose four hours of disjointed sleep, or none at all, an admitted improvement from when he was younger. My days were filled with therapists and specialists and medications and trying to hold our fractured lives together with my bare hands. I didn’t have the experience or the knowledge to do this.
You don’t really get a choice on what you can handle and what you can’t. This is what we were given, so we made it work. I packed my feelings about that day into a box and shoved it as far back as I could so that I could muddle forward for my family. After a six-month stint on Zoloft, Emerald learned emotionally how to navigate her new “normal”. She wasn’t happy about it, but she coped, which is about the most I felt we could ask for.
Maybe it got too easy. Maybe I got too comfortable.
More likely, it had nothing to do with me--these things just...happen.
Four and a half years after Emerald was diagnosed, her infant sister Tula went into DKA.
The signs were there, again. I missed them all, again. She wanted to nurse a lot more than usual but she was showing signs of dehydration--sunken eyes, chapped lips. But how could she be dehydrated if she was having so many wet diapers? Her little frame, the smallest of my babies, felt like just skin and bones.
Didn’t click.
Tula’s ended up being more traumatic for me than Emerald’s. At the time, Emerald felt so small, so young, but she has always been exceedingly bright and independent. She picked diabetes up like it was nothing, learning to manage it with more maturity than a child her age could. While I was not expecting either, this somehow came as more of a shock because she’s just a baby. How could we possibly miss it twice?
Tula wore this gorgeous purple striped Kickee Pants swing dress when I took her to the hospital. It had to be removed when she vomited all over it. I washed it and let it hang in the closet for months before giving it back to Aunt Amber--I couldn’t bear looking at it any more. There are a few memories like that, those sensations that cause white hot pain to shoot through me, to relive the terror of that horrible day. It takes my breath away when I hear the song “The Words I Would Say” by Sidewalk Prophets because it was the one that played in the ambulance to Cooks. The smell of the Pantene conditioner that I had used on her that morning turns my stomach now. Little snippets that take me back to that moment when it felt like the world stopped turning.
It will fade, I know. Eventually I will stop waking up to feel for her pulse in the middle of the night, or lay there watching her chest rise and fall. Pictures from the hospital stay will no longer knock the wind out of me. I will be okay.
Even then, my girls will still have to deal with this. With the trauma and the uncertainty, with the powerlessness you feel because of unpredictable highs and lows that you have no control over. Long after I am sleeping through the night, they will still be getting up to test themselves, realizing they miscalculated and overdosed to threat of their well-being. It will be their job to budget for grossly overpriced insulin or decide to lethally ration themselves because they can’t afford it, a choice I hope they will always bring to their parents first so we can prevent it. And to live, day in and day out, with the fear.
Because it never was about me. I can tell you how horrible and how hard and how damaging it was for me, but I am not the one who gets the pokes, the shots, the blood work. I am not the one sitting out at PE, watching my friends play, the only one at the birthday that gets a pickle instead of a slice of cake because my blood sugar is too high. The consequences for being wrong are not mine to deal with--I am not at risk for going into the hospital if I go too high, or the one that drags myself into the kitchen for orange juice because I’m too weak to walk. Next week while we are celebrating Thanksgiving, I won't have to watch everyone else celebrate to excess while I cautiously calculate and ration how much I am allowed to eat.
Today--November 14--is World Diabetes Day. You are supposed to wear blue, which is oddly reminiscent of world autism day, but there are only so many colors, we have to share those, too. It may not be the worst disease out there. There is no surgery, its not cancer. I can acknowledge:
We are lucky.
Even then, my girls will still have to deal with this. With the trauma and the uncertainty, with the powerlessness you feel because of unpredictable highs and lows that you have no control over. Long after I am sleeping through the night, they will still be getting up to test themselves, realizing they miscalculated and overdosed to threat of their well-being. It will be their job to budget for grossly overpriced insulin or decide to lethally ration themselves because they can’t afford it, a choice I hope they will always bring to their parents first so we can prevent it. And to live, day in and day out, with the fear.
Because it never was about me. I can tell you how horrible and how hard and how damaging it was for me, but I am not the one who gets the pokes, the shots, the blood work. I am not the one sitting out at PE, watching my friends play, the only one at the birthday that gets a pickle instead of a slice of cake because my blood sugar is too high. The consequences for being wrong are not mine to deal with--I am not at risk for going into the hospital if I go too high, or the one that drags myself into the kitchen for orange juice because I’m too weak to walk. Next week while we are celebrating Thanksgiving, I won't have to watch everyone else celebrate to excess while I cautiously calculate and ration how much I am allowed to eat.
Today--November 14--is World Diabetes Day. You are supposed to wear blue, which is oddly reminiscent of world autism day, but there are only so many colors, we have to share those, too. It may not be the worst disease out there. There is no surgery, its not cancer. I can acknowledge:
We are lucky.
--Andie
No comments:
Post a Comment